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Old Fri Jan 3, 2014, 03:33 PM
Peachy Peachy is offline
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Join Date: Apr 2013
Location: Colorado Springs, CO
Posts: 59
RAEB1 to AML in 8 short months

Hello All – My husband just completed his 4th round of Vidaza the first week of Dec. Follow up BMB showed his blasts had grown from 5% to 35%, thus diagnosis of AML.
We thought Vidaza was helping as all counts seemed to get better, but that does not turn out to be the case. To further complicate matters he had a lymph node removed that appears to be cancerous. Final diagnosis of that on Monday.

It took me about a week to finally figure out the actual name and subtype of his AML. It is called “pure erythroleukemia” (pEL) which falls into the category of AML M6b. (Who knew there was an M6a and M6b). From what I can tell so far this is one of the rarer types of AML. There does not appear to be a lot of info on pEL.

Our options: BMT, Heavy Chemo, Trials or nothing.

Am hoping you all may be able to help me with a few questions and/or your experiences:

Is induction therapy the name for the Heavy Chemo? We were thinking that since the Vidaza (4 rounds) was ineffective that this may not be a path to take.

Secondly – as trials also include a percentage of folks with a placebo, and this being an aggressive form of AML – that we didn’t want to take the risk.

Thirdly – he is 68, so BMT is still very risky. Doing nothing is not an option for us.

Since he was doing so well we had slowed the research on BMT and now find ourselves in fast mode getting up to speed. Needless to say we are in a state of shock and doing our best to get educated (any suggestions greatly appreciated) and finding a good outfit for the BMT. We live in Colorado and are checking out a place in Denver and also Mayo Clinic in Arizona (we were there earlier this year) to start with. We know that we have to move quickly. Another possibility is Dana Farber in Boston.

Unfortunately he has no living siblings. The good news so far (as we understand it) is that there is no chromosome involvement (final results yet to come). Otherwise he is healthy, up until the swollen lymph node showed up 6 weeks ago.

Any suggestions, comments and/or information and/or where to find it would be helpful. I realize this is an MDS forum – but we can’t be the only folks that made it to AML. If there is another place I should go, please let me know that as well.

You all have been very helpful during my posting time, which has been short at best and mostly about fevers, Vidaza and pneumonia. I met a forum member here in Colorado who has helped me understand the different BMTs. If we are to receive one it will more than likely by the allogenic variety.

Thanks for being here… Peachy
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Husband 69 dx MDS/RARS 4/2012,Arenasp 2013; dx RAEB-1 5% Blasts - transfusions, Vidaza - BMB 12/2013 35% blasts - dx AML M6b (Pure Erythroleukemia) - Induction/Consolidate complete Aug 2014 - BMB 5%; Not accepted for BMT ; New BMB 18% Blasts with dropping whites and platelets avg HGB 9
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